UPDATE

It has been a while since I have written an update or a blog so this will take care of both. I wish I had better news but unfortunately I have to deal with the reality of where I am at, at the moment. Its tough to weather this kind of thing with grace, especially when we keep getting bad news. But as Miguel, a che'ney (Masotec for ~ "he who has access to hidden power" / a traditional healer who I have been working with) sang in the recent healing ceremony for me:

CHEMOTHERAPY: The biggest news this month is that the Chemotherapy (Taxotere / Docetaxel) that I was doing is no longer working. My PSA (Prostate ((not-so))-Specific Antigen) was at ~80 when I started chemo and it is now at 179 and rising. This is the primary indicator that the chemo is not working anymore and also my latest bone scan confirmed that there is more metastasis, mostly in my pelvis. I got this news about a month ago and since then I've been researching what to do next. As a result of the rise in PSA and the decision to look for another treatment I ended up having a small chemo vacation and went 5 weeks without chemo instead of the usual 3. This was a mixed blessing. On one hand it was a relief not to get the chemo flu again and I had more energy then usual. On the other, I ended up having substantially more pain in my left pelvic crest. So on week 5 I got another dose of Taxotere which, interestingly, is still helping with pain.

NEXT STEP: I decided to start a new trial at UCSF which is a combination of two chemotherapies; one old (Mitoxantrone) and one new (Epothilone B). The theory is that they will have a synergistic effect which will make them more powerful in combination. It looks like a good next step in terms of it being a potentially effective trial that every oncologist who I have talked with thinks could be an effective combination. This trial also keeps the most number of doors open for me in the future for other trials, if it doesn't work. And it is close to home and to my support systems which are almost equally important logistical issues when deciding what to do and where to go.

The clinical trial experience is personally frustrating and completely unsympathetic to the individual's predicament, but it is the only way / chance that I can get treated with some drugs. This new trial is a Phase I / II trial and I am guaranteed to get the medicine. The last trial was Phase III and I was randomized out of getting the experimental drug G-Vax. I doubt that I will ever do a trial like that again but at the time I felt justified since it was my first treatment with chemotherapy and I was guaranteed at least the Taxotere, which is the "standard of care" outside of research hospitals. I was hoping that the standard of care alone would work, which is a conservative choice when you are dealing with clinical trials where toxicity is always an issue, especially if you are young and don't want to deal with the unknown long term side effects of unproven drugs.

SIDE - EFFECTS: I won't really know until I try but the list is very similar to the last treatment which includes fatigue, nausea, vomiting, digestive problems, nerve pain and general flu-like symptoms. The transfusions will take about 4 hours compared to one hour for the Docetaxel. But Mitoxantrone is considered fairly well tolerated and so far no-one has had very bad side-effects from the Epothilone. If you would like to know more details about the chemotherapy just let me know.

PROGNOSIS: I'm not out of the woods. I have no idea if this new treatment is going to work. I still believe that something will work and that ultimately I will beat this thing. I am doing a lot of complimentary treatment with herbs and supplements and I am working with a number of people who are following the latest research and experimental treatments for prostate cancer in the U.S., Europe and China. I have also been doing healing ceremonies with Miguel which are immensely healing on an emotional and spiritual level, and hopefully a physical one too. At the very least, the "Ghostdancing" with Miguel is transforming my experience of life. Its difficult to describe, like trying to define Love or God. But I feel lucky to have a sense of knowing that no matter what, everything is going to be okay. If you want to know more about Ghostdancing you can check my blog.

WORK: Not much change here except that I now sometimes feel like volunteering. My energy is still up and down and I am not sure what to expect with the new treatment. I am interested in doing a little more travel and small, week long projects on occasion that would give me inspiration, a chance to give something back and a chance to be with people. I miss playing with my friends..

HELP: Beth and I can still use all the same types of support especially during the first week of treatment. We are learning that it is better if someone else does the actual coordination and communication with the various people that want to help. This takes a lot of pressure off of me. Our friend Johanna has offered to coordinate the cooking, rides and chores, so anyone interested in this type of help can contact her at: johanna@caminoroyale.com or 415-299-7095

IMMEDIATE NEEDS: We are looking for a freezer -- that we can put in our garage to fill up with food. We are thinking about a chest style at least 7 cubic feet of storage, but anything will do. This is the easiest way to create the most benefit with the least amount of disruption. With a freezer, people can cook when they have time and deliver it to the freezer in our garage when they are able. Then we can easily get it when we need it. If anyone knows of a freezer that is available and has a way to deliver it please let us know. It will be immensely helpful if you find a freezer that you also coordinate the delivery.

FUNDRAISING: The photo website is raising a little money - A BIG THANK YOU TO ALL! I will be posting new photos there so be sure to check in. Also Celia, Deborah, Fern and others have started to plan a fundraiser for late April in San Francisco, stay tuned for that.

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with elegance and grace you speak....and old soul so grounded and this moment of your life speaks to so many as your voice always has.I can not articulate what i truly feel for you jerband if i could express as eloquently as you i would hope for you to know beyond wordsbeyond lovebeyond everythingwhat i feel for you and what an inspiration you are even in your time of such need and such pain and such reality....i am left speachlessall i can mutter to youwith such feelingand truthand conviction is trulypure lovefrom meto youyes my sweet sweet soul mate/friend/inspiration/i loveyou